Wednesday, May 20, 2009

I had my chemoembolization on Tuesday, May 5 according to the calendar on this blog. The procedure itself was somewhat interesting for the little bit of it I remember. It was done in a room that seemed to be a cross between an operating room and a really slim and sporty MRI or CT machine. I don't remember all that much of it actually.

Staying the night in the hospital was kinda boring and I found the bed uncomfortable. It was an air mattress that made noise whenever I shifted weight, as some pump moved air to another part of the mattress. But I think it was permanently set to 'concrete' as a comfort level. I didn't choose to hit the pain meds all through that day, but when night came I hit it a couple times to help me sleep through the night. Most of my issue, to me at least, was the bed.

I left the hospital Wednesday and took it easy. This is pretty much indistinguishable from my routine except that I did not go to work. Thursday I tried to work from home, but only managed to do so for what I would bill as a half day. And again, I took it easy (whether or not anyone can tell the difference is another story).

Friday I went into work, but again managed about a half day. The thing that I started to recognize as my issue was perhaps a very bad case of acid indigestion. It was causing an upset stomach, but what I really felt was pain in my back and shoulder. Saturday night Ryan was returning, and Noel and Cathy also dropped in to visit. The whole time I could not sit still -- I was perpetually uncomfortable and kept changing seats or going to get something mostly for the sake of moving around.

On Sunday (I believe) I was talking to Dan on the phone and mentioned this, and he told me about the stuff he takes for a similar issue. I just happened to look over at my meds and found that I had "the cure" lying around. I'm not one to medicate myself if I don't feel "more than a little icky" -- so I stop taking some of the things I'm prescribed and tend to forget a little.

After taking the Prilosecs, or whatever, I had the return of the appetite. This may seem like nothing, but I really haven't had an appetite since the time before 1990. Suddenly, though, it came on full force and I was eating three times a day. In most recent years I wasn't able to do that for more than a day or two if I was really trying. For the moment, I'll try to take this as a good sign.

In fact, all-in-all I've been feeling rather perky the week or so. I've even needed a shave and some hair is coming back in on my head. The hair feels like a baby's hair, and I'm not sure if it's coming in dark or if it's gray. It's pretty good timing, though -- the hat I've been wearing was beginning to get a little warm now that we're crossing into summer.

And with the change to warmer weather, we've been doing some yardwork: getting the lawn mowed and raked (though I did poke myself removing the dethatcher blade and now apparently need to get a tetanus shot); Angie and the girls planted flowers. We're keeping busy with that sort of stuff.

Thursday, May 14, 2009

At Cathy's surprise 40th birthday party in March, several friends initially put together the idea of doing a benefit for me. I resisted at first -- I'm not the type who likes to ask for help, but I have since relented.

Noel asked me to provide some information for a flyer. I borrowed some material from this blog and gave Noel a copy to touch up. Here's what we'd come up with:Benefit

I've stayed pretty hands-off on this. Angie and Noel and others have been doing the work. But since paper versions have been floating around the real world for a while now, I thought I'd also post it here.

Monday, May 4, 2009

I've been asked more than a few times about considering treatment options somewhere else. I've looked into things a bit, and I believe both Dr. Amatruda and I are both open to suggestions. My sister Karen has looked into possibilities in the Seattle area for me. I passed this along to Dr. Amatruda who replied,

I dont know of any unique therapies available in Seattle. John Thompson is a melanoma oncologist out there who is excellent.

You may wish to see if he has anything of value for you. Let me know if I can help sort out any information, etc.

In the past week or so since I found out that the chemotherapy wasn't working, I haven't looked into the other options in detail. I've had some scans and prep for tomorrow's chemoembolization. Essentially, I believe, the attempt at a systemic treatment to halt progression and get rid of the tumors (the chemotherapy) failed. Right now the primary concern is to stop these tumors from progressing. The chemoembolization is another attempt in that regard.

And I still have IL-2 related possibilities -- such as clinical trials -- out there as an option. What we decide to pursue tends to be with regard to the most recent scans and my tumors' responses to the treatment. We are pretty much continually looking into new developments, even though many don't seem to fit my situation for one reason or another (like the Mayo study due to my A3A11-ness).

Bottom line: yes, we're open to any options. Evaluating, comparing, contrasting, and considering pros and cons tend to make for interesting little consultation sessions. So please, keep any ideas coming. I want to find something that works as much as anybody!

Sunday, May 3, 2009

My friend Ryan was visiting this weekend while passing through from the Philly area to North Dakota. It was a good visit; we pretty much just talked and stayed around the house all weekend.

One of the things that I'd forgotten was his motorcycle accident in the early 90's: talking to him on the phone doesn't show that his walk is still not what it was before the accident. But he also mentioned his near-death experience from that day a long time ago.

That brought to mind a blog post I'd made back in November 2007 on one of my prototype blogs elseweb. Much of that post was a show I had found online and posted. Here is a slightly trimmed version:

Near-Death Experiences

Also along the way I encountered the experience of Howard Storm. I found the following interesting regardless.

As a footnote at least, I need to mention that I do not always fully take in the mountainous information that one can encounter as a result of searching the web. But I did feel the need to make special mention of a book that I had read decades ago with no original correlation to the development of my current debate. But encountering it 20ish years later within my searching is a coincidence I have no issue with sharing. Embraced by the Light is a good book to read for any reason.

I also found it interesting with that book. I had read it rather out of the blue (as far as I can remember) about 20 years ago. I had interest in it again back in 2007. And I certainly had a renewed interest in it of late. I had ordered it a couple months back and reread it over a weekend.

It's quite interesting to look back at the things I'd read and try to ascertain whether it was my initial read that influence some of my later views, or that my later views ended up matching a number of things that happened to be in the book.